This is the story of our precious daughter, Sara Rose. She was born at 27 weeks. This details our journey as a family through the ups and downs of this situation. She is our 3rd daughter, she has hydrocephalus and now lives with a shunt. She is home now and her older sisters adore her. Here we are, living and depending on the strength and grace of our Father in Heaven.

Thursday, July 2, 2009

ThursDINGday NighDINGt

Had a DING good night witDINGh Sara. She iDINGs really looking DING fatter and DING healthier. She is DING eating well and DING tolerating DING her feedings very DING well.

Is this getting aggravating to read? Well now you have a little taste of holding your daughter in NICU. Those who have been there can relate. The lead that measures the oxygenation of the blood is the most fluctuating number. When it goes down it is called de-sating. They like it to be above 88 and below 95ish. Not 100 and not 84 or below. And when it goes below 85? DING DING DING DING DING DING DING DING. And then it goes up and stops and then back down and up and down and DING and no DING and DING no DING. But as you can tell I hardly notice.

Now there are a myriad of reasons why this number fluctuates. Airways being open, position of head, not too far forward, not too far back, Sara under stress, obstruction in airways, reflux, forgetting to breath, blue moon, the Dow drops, the Yankees win, a large truck passes by the hospital, and the cow jumps over the moon; as you can tell a common occurrence. You adjust her head, up her O2, stimulate her, and pray. Needless to say, it adds unnecessary pressure to just relaxing and holding your child. It is one of the necessary evils of NICU. She needs it, they need to know it, you just learn to live with it. But if you haven't been in that chair with that DING, well.. you just have to experience it.

Sara is on a new oxygen machine tonight, a step down. She has been hovering around 2.0 liters per minute and 21% O2. She is eating 35 cc's every three hours and doing great. She was tapped today, first time since Saturday, and it looked better. Jennifer was also about to put her to breast tonight and she didn't do as well, but she had been tapped just a few hours earlier, we think that is why. Still making progress, in fact based on this post we may need more prayers concerning the DING than Sara. Have a great Friday!

6 comments:

Lol...the 'dings' brought me right back to the NICU. I remember having the frustration too of the boys dropping their O2 numbers when we held them. It'll get better and eventually she'll grow out of it! You're in our thoughts and prayers.

Oh wow do I remember those 'dings.' I remember when we first started the kangaroo hold I would sit there and pray constantly that she would keep her sats up, because I knew once she started to desat it meant our time was up. And I so loved holding her! It just makes your time in the NICU more bearable when your baby is in your arms. Also, she had difficulty with feedings when she started nursing and taking bottles and would sometimes have episodes that would cause the alarms to go crazy. Then the car seat challenge. Oh boy. It's amazing how quickly this all comes back.

It is something that she will eventually grow out of though. One day she will be a happy healthy one year old and you will be reminiscing on someone else blog. ;) Our 27 weeker will be one on the 26th of this month. :)

I really needed the laugh I got today from your post Jared!! I remember very well the dingingness of the NICU lol but what is really crazy is how you miss those dings when you bring them home for about the first day. You get used to know exactly how and when and what your child is breathing. I still dream of those dings occasionally!!! I don't know if they allow ya'll at that hospital but it got to the point that the nurses showed us where the mute button was at!

I remember those dings well from our numerous stays in hospitals and the PICU after our baby girl's surgery.Romans 12:12"Be joyful in hope, patient in affliction, faithful in prayer."Peace and Grace,Amy

Oh the dings!! Won't be missing those. But trying to hold a baby with a gown that wants to fall off and rubber gloves on is like shoving cotton up your nose and being told to enjoy the fragrance of a flower. Or in this case Rose.. Still praying buddy.Scott